The last eight weeks have been tough. Not that you’d know. I’ve been like a swan. Graceful (ish) above the water, paddling like billio below. That’s the thing with our curated world, it’s hard to see through the Insta-perfect projections of life. From meeting me or glancing at social media it all looked like busy-ness as usual: bikes, workshops, trains and shoes. But deep down I’ve been super-stressed.
I got a letter about 10 weeks ago saying that as part of a random assessment of blood test results I had a marker in my blood for Pompe Disease. First thoughts: What the chuff is pompe disease? What blood test? I tackled the first one first.
Dr Google has no bedside manners. Pompe disease is a progressive weakening of the muscles. Primarily those responsible for breathing, walking and the arms. Cripes. The rush, the panic, the feeling sorry for myself hit me like a train.
There was a number on the letter. I had to wait until 9.00 to call it. On the dot I did. “What blood test” I asked. Turns out I had a routine blood test in 2013 and because Pompe Disease is so rare a large screening programme was launched. Still…..
But they weren’t. Of the couple of thousand screened two had confirmed Pompe. So the odds were now. 1,000 : 1 Still….
Next steps was another blood test in two weeks. I had a lovely chat with the nurse. She was married to the research Dr conducting the study. Married for over 40 years. I’ve shit veins so it’s always a bit of a lucky dip finding one. How long would the test take to come back?
“Well, I don’t work Wednesday, Thursday or Friday so these won’t go off until next Monday then as there’s no rush I think the lab will get round to it in about a fortnight. There’s no rush”.
Good grief. This is urgent, there is a rush. This cuts to the heart of my self-worth.
I am physical. I played rugby at a really high level, I ran and jumped at county level, I love thai boxing, I love cycling.
Activity is my element. What the hell was I going to do if I couldn’t run, jump, box, cycle. I hadn’t got as far as thinking about not breathing unaided.
The odds now? The odds in my head were evens. I either had it or I didn’t. It was binary.
So I sat and waited. And waited. And waited. Part-way through the wait I had a trip to Lisbon. I didn’t want the kids opening the letter whilst my wife and I were away so I called the hospital. “Oh no, they’ve not got around to it yet. There’s no rush”.
No rush! No rush! I’m calculating odds as low as evens here. Every time I get a twinge, a flicking muscle; every time I feel tired or achy; I fear the worst. I reckon I could imagine myself into most diseases.
Lisbon came and went. I emailed. Twice. Nothing.
Then like the overdue drop in an irritating dance track, the letter plopped through the letter box. There was no sign of Pompe Disease.
I knew that. And I knew it all along.
But why was I so het-up? Because (apart from falling off a cliff in a confined space like a barrel or clowns; ooh a barrel of clowns and me falling off a cliff — eek) this type of disease is my worst nightmare. We take being able to run, swim, move for granted. Some people can’t. I align my self-identity with my physicality. Some people can’t. Exercise is my safe space; it is where I go to think; it is where I go to meditate. Some people can’t.
This is a nothing story. Man thinks he may be ill. Has a few uncomfortable weeks waiting. Isn’t ill. The end.
But these kitchen-sink dramas teach us things. This one reminded me that life can be short. It reminded me that it can be long but restricted. It reminded me how fortunate I am. It reminded me what I love doing; what I am. It reminded me that the post doesn’t always bring bad news.
It reminded me to move as much as I can, whilst I can.